Medical Information

In so many fields, owing to the Internet-driven democratization of knowledge, we learn that that the power associated with hoarded knowledge has been abused, and the position of leadership – the priesthood – associated with the acquisition of knowledge has been leveraged to manipulate and deceive. “Everything you know is wrong!”

David Freedman has a great article in the Atlantic about medical deception, called “Lies, Damned Lies, and Medical Science,” which focuses on Dr. John Ioanniddis’ dedication to exposing bad science in medicine.

He’s what’s known as a meta-researcher, and he’s become one of the world’s foremost experts on the credibility of medical research. He and his team have shown, again and again, and in many different ways, that much of what biomedical researchers conclude in published studies—conclusions that doctors keep in mind when they prescribe antibiotics or blood-pressure medication, or when they advise us to consume more fiber or less meat, or when they recommend surgery for heart disease or back pain—is misleading, exaggerated, and often flat-out wrong. He charges that as much as 90 percent of the published medical information that doctors rely on is flawed. His work has been widely accepted by the medical community; it has been published in the field’s top journals, where it is heavily cited; and he is a big draw at conferences. Given this exposure, and the fact that his work broadly targets everyone else’s work in medicine, as well as everything that physicians do and all the health advice we get, Ioannidis may be one of the most influential scientists alive. Yet for all his influence, he worries that the field of medical research is so pervasively flawed, and so riddled with conflicts of interest, that it might be chronically resistant to change—or even to publicly admitting that there’s a problem.

At e-Patients.net, Peter Frishauf writes a response to the Atlantic article, called “Fixing those Damn Lies.” How do we fix them? The Atlantic piece discusses Ioannidis’ suggestions to change the culture of medical research, and reset expectations. It’s okay to be wrong in science – in fact, it’s almost a requirement. The scientific method is about testing and proving hypotheses – proving can be “proving wrong” as well as “proving right.” Either way, you’re learning, and extending science.

Frishauf also mentions how medicine and science should embrace the Internet “and figure out a way to better incorporate patient self-reported and retrospective data in trials,” which is one goal of participatory medicine. He also suggests “giving up on tenure-tied-to-the-peer-reviewed-literature, and embracing a moderated form of pre and post-publication peer review,” something that came up in discussion when I spoke at the Central Texas World Future Society Tuesday evening. (More about this in an earlier e-Patients.net post by Frishauf.)

Knowledge is not a citadel or ivory tower, but a network that we could all be working, challenging, and improving.

Susannah Fox has posted two sets of questions about e-patients, sent by Liav Hertsman and his colleagues at Tel Aviv University, that call for further research.

First set: 1. How would you describe the typical online active e-patient in terms of demographics? 2. In which stages of the diseases do e-patients usually need medical information the most? Why? 3. In which stages do they search for information about drugs? 4. How substantial is the e-patients’ drug search in comparison with their overall search about health? 5. How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients? 6. Do e-patients who are interested in UGC also tend to cross-check the information, using professional sites or do they tend to rely solely on the UGC? Why? 7. What do the e-patients value more, specific information or general information? Is it treatment stage related? 8. In your opinion, should a health site offer diverse information or focus only on one area of expertise? Why? 9. What tools are important to have on a health site (i.e. communities, experts’ reviews, doctors’ ratings, drugs’ ratings, etc.)? Should a health site offer several tools? Why? 10. Do e-patients prefer a one-stop-shop site, where they can find every information related to health and every tool they need, or do they prefer to gather information from several sites, each with a specific specialization? 11. What causes an e-patient to return to a specific health site?

Second, followup set of questions: 1. Are there any specific studies related to online behavioral health resources that you might recommend? 2. Are there any specific studies directly related to the use of online health assessments? 3. Are there any specific studies that might support or refute the merits of utilizing online health resources for mental/behavioral health issues?